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February 3, 2010

A testimony on behalf of Early Intervention

On Friday, March 6, 2009 our family’s world fell apart. We received notice from our medical team at the University of Utah that our beautiful baby boy had a 24 month life expectancy. And, 14 of those months were already up. It was every parents’ nightmare.

We had suspected something was wrong with our son, Bertrand, since birth. Doctors finally agreed by the time he was 6 months, and by 9 months he’d lost most of his milestones. This was when we were referred to Baby Watch Early Intervention. The goals set for Bertrand on paper involved meeting new milestones (such as sitting unassisted) and reviving old ones (such as using hands). At the time, I thought this was the extent of Early Intervention. I couldn’t have been more delighted to be wrong.

Over the proceeding months, Bertrand’s Early Intervention therapists, Kirsten Aalberg and Meghan Boyd (our angels), fought to keep his skills from slipping but, just as important, they taught me: how to be a better mother to a special needs child, how to be his advocate working within various systems and how to stay hopeful. Staying hopeful proved difficult as we traveled and consulted with medical teams at Duke, UNC, Baylor, Johns Hopkins, and even an entire section at the National Institutes of Health. Our son, we learned, was unique--rare disease unique.

Through this I learned that modern medicine and even a mother’s love is not enough. Our family relied on Kirsten and Meghan to keep pushing us forward in the face of overwhelming odds. They hugged us as we went off to seek second opinions, comforted us as we received bad news, and cried tears of joy as Bertrand beat the odds. Their experience and faith in our child’s ability, flying in the face of his grim prognoses, and our son’s resulting development has defied medical science.

On Friday, January 22, 2010, at 25 months-old (a month past his predicted expiration date) Bertrand laughed for the first time. He is thriving. He is trying to speak and learning to read. He will someday soon walk. He’ll be able to go to school. Doctors are baffled in the best possible way. Bertrand’s white matter loss appears stopped and, while he still has a long way to go developmentally, something I’d long given up hope for appears possible: he has a shot at a normal life.

All children deserve a chance for happiness and a chance for a bright future. Early Intervention makes this possible and helps all of us by:

Giving children life skills early on. An ounce of prevention is worth a pound of cure, and this couldn’t be more true than with a child’s development, which is exponential over time.

Giving caregivers skills and courage to interact positively with their children, spouses, doctors, the school system and the community at large.

Giving the community an opportunity to develop contributing members of society, who might other wise be lost, all the while doing the right thing for the youngest and most helpless among us.

In these tough economic times, as Wall Street has shown, it is easy to be shortsighted and look for the quick fix. But, cutting programs such as Early Intervention would be shortchanging Utah’s future. Thank you for giving Bertrand a chance at a normal, happy life. Our current crop of youngest, most helpless Utahans deserve the same opportunity.

The written testimony above was delivered today in person by Bertrand and his Mama to the members of the Joint Health and Human Services Appropriation Subcommittee at the Utah State Capitol. Bertrand hated the politics and the waiting, but loved the Capitol museum, fountains and buildings.

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The Bertrand Might Research Fund has been established at Sanford Burnham Medical Research Institute, a 501(c)3 charitable organization. Your donation will help Dr. Hudson Freeze’s lab begin to unravel the mystery of N-Glycanase deficiency, and hopefully find a treatment in the near future.

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Now I Can is a nonprofit 501(c)(3) charitable organization dedicated to helping disabled children reach their greatest potential through intensive physical therapy. Bertrand has benefited greatly from sessions there: Oct 2011, Dec 2011, May 2012, Aug 2012. His next session will be in July 2013.

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